The story is a profound one that holds a mirror up to the structures of the society in which we live and just how easy it is to be disenfranchised from those structures if one moves away from the usual track of life’s ups and downs. The story is also a critique for the mental health system itself. Incisive observations are offered as to what is the very best and worst of the system, telling examples of what needs to be put right in our own ‘back yard’. Wakefield makes a plea for greater hope to be offered. I stand by her in making that plea and join with her in asking for recovery to be the theme for mental health care in this country.

Professor Anthony Sheehan, former Director of Social Care for the Department of Health.

Schizophrenia causes incalculable suffering to both patients and their families. This book is reflective of a jouney that unfortunately far too many patients and their families have to make. The book encapsulates the hopelessness of the situation, the frustration and finally the glimmer of hope as the whole family slowly move forward on the long road to recovery.

Julia Bileckyj, Independent Healthcare Management Consultant.

A chapter from “Loving Christian”

How can you cram twenty years into one book chapter? Even the most powerful, well-chosen words seem to be inadequate, so I can only do my best. This chapter is in two halves, the first half concentrating on the bleak, early years, and how hard they were. The second is about recovery or as I see it, ‘discovery’, because that’s what it is all about – discovering what works well and what doesn’t. All carers go on this journey of discovery because we discover things about ourselves and carers also have to recover from this tragic life event themselves. First and foremost, carers have to learn acceptance, and it has taken me many years.

Another carer explained to me how she coped. She said: ‘I was forever thinking/grieving about what life should have held in store for my son but if all of your life you’ve wanted to go to Italy only to find that you’re going to Holland, thinking constantly about Italy serves no purpose simply because you miss the sights of Holland [windmills, scenery, tulips etc]. It’s accepting that you’re not going to Italy that proves to be the hardest part of all. It’s also accepting that we are totally powerless over what happens to us, or indeed to people we love. All we can do is provide support, compassion and love.’

My youngest son Christian developed paranoid schizophrenia around the age of 15. He is now 36. Life in 2010, has finally reached a far more manageable and peaceful stage; the early years (thank god) are now behind us. When I think about the early years I still shudder – the nights without sleep, the endless reassuring, the overwhelming sadness and grief. There are no words to adequately explain what it feels like to watch someone you love so dearly losing their mind right before your eyes. Only those who have walked this walk can share this.

The wilderness years

Initially, the confusion in itself was overwhelming. I was plagued by thoughts and questions. Is he just being a difficult teenager? I’m sure he’s smoking cannabis. Is his behaviour down to the drugs? Or is this something far more sinister, for example, the beginnings of a severe mental health problem? Following 15 months of sheer hell and three visits to his GP, I was told twice that I’d have to bring him to the surgery in person. How was I expected to do that when my son had totally lost sight of reality and would tell me: ‘It’s you who’s mad, not me’?

On the third visit a friend came with me – I was in bits by then – and she asked the GP if he thought Christian was mentally breaking down? ‘I’ve no doubt that he is’, was the reply. To which my friend then said: ‘How do you expect him to make a rational decision to come to the surgery if he’s mentally breaking down? Those two things don’t go together.’

With that, he finally sent two social workers to our home. After 20 minutes with Chris they said that within a fortnight he would have been sectioned anyway – as if I didn’t know that. One of them said, ‘He’s very thin Mrs Wakefield, surely you must have noticed.’ He was, of course, very thin – he weighed about 8 stones 2 pounds and at 6 feet 2 inches, but I was in far too much of a state to tell the social workers how difficult it was getting things through to his GP.

Then came the visit to the consultant psychiatrist who told us our son had a thought pattern disorder and that they were putting him on four weekly intramuscular injections of Piportil. That was it, nothing more was said. We weren’t warned about the effects that the drugs would have; for example, he started to sleep for 16 hours a day and walked around like a zombie with lead boots on.

We felt as if we were out in the wilderness for the next seven years. Life went on but Christian had no life, no friends, no fun, no holidays, no relationships. His friends abandoned him, one of them actually said to me: ‘It’s really sad but don’t ask me to visit him.’

We took him on holiday and it was a disaster, he became more and more unwell by the day. When we got home his GP prescribed some tablets in addition to the Piportil, but they caused a dystonic reaction (a syndrome of spasms and sustained contractions of the muscles), a side effect of the medication change. His whole body and face twisted up and we had no idea at all that this was even a possible ‘side effect’. I rang his GP at 11pm. I was crying and extremely scared. I asked the doctor to come out because I thought my son was having a fit. He refused point blank and said to give him two Procylidine tablets to counter the side effect of the other medication. I did, and it made no difference. Half an hour later I phoned him back and this time I begged him to come. When he entered our home Chris was in a ball on the floor still twisted up. He said we should pull ourselves together get him over to Accident and Emergency (A&E) where they would ‘zap’ him. I asked him what he meant by ‘zap’. ‘They’ll give him an injection which will release it,’ he replied.

We took him (half carrying him) to A&E in our car. On the way he was trying to get out of the car by opening the door, but his brother just about managed to keep him in his seat by brotherly brute force. This was a very dangerous situation and the GP should have prevented that risk by calling an ambulance. I will never forget that night, I call it the worst night of my life simply because it was so horrific to witness a young man of 21 going through so much pain and anguish.

The psychiatrist prescribed Chris two other neuroleptics (Olanzapine and Ritanserin) to see if they would have any positive effect, but neither helped his condition so he was put back onto Piportil again. His brother, Steven, left home to live with his girlfriend in the May of 1997 and we didn’t have a clue how much Chris would miss him. Steven was, by now, the only young person in his life.

Christmas 1997 was another disaster. Christian became very ill and two days after Christmas he relapsed and was admitted to an acute ward. After five weeks he was moved to a Rehab centre – little did we know that he would stay there for the next five years.

We would visit him in the week and then have him home at weekends. When we went to see him for the first time our hearts sank; many of the residents were much older than him. There he sat, dressed smartly as always, looking extremely handsome and totally out of place. He would phone me constantly begging me to take him home but we knew we couldn’t manage. Sometimes he would threaten to run away which pulled at our heartstrings. One sunny Friday evening I looked round at him in the car and the tears were streaming down his face. He told me that his head was all over the place and he didn’t know how to straighten his thoughts out. I felt so very sad and thought, if only I could get inside his head and untangle the jumbled wiring to release him from his pain. The months rolled into years. When Chris had been in rehab for almost two years my husband Paul and I attended a Rethink seminar in Chelmsford. Professor Adrianne Reveley was conducting a presentation during the lunch break. Afterwards I told her about Chris, now 25. I explained that he became ill at 16 and had been in care (in a rehabilitation centre to help him return to life in the community) for two years. She asked me if he had ever been tried on Clozapine? When I replied no she went on to explain that Chris was probably treatment resistant (TRS) and that Clozapine was the best medication for people that were TRS. And so, in 1999, seven years into his illness, and two years into his stay in Rehab, he was prescribed Clozapine on a trial basis. He’d been tried on two other neuroleptics but neither made any difference to his condition.

He’d been on it for about three weeks when Paul and I thought he seemed better. We were almost scared to believe it. Twelve weeks later Chris was moved into 12-hour care – a further step towards independence. He was to spend another two and a half years there.

A psychiatrist once said to me that recovery in mental illness is like a flower bulb in your hand – years later it’s grown in size. It’s just terribly slow – it is happening but you just can’t see it.

As far as Chris was concerned, I do think it’s far worse to develop this condition at such a young age, if you’ve had relationships, learnt to drive, held down a job, lived independently, you have all of those things to fall back on as you travel down the long road to recovery. Christian hadn’t experienced these things and consequently he became caught up in a time warp. So finally, in September 2002, Christian was well enough to move into his own flat, a five-minute car journey from where we live. Just before he moved a hundred residents staged a protest at a junior School across the road from the flat stating: ‘We don’t want the mentally afflicted living near us.’

A colleague of mine who worked for the mental health charity MIND at the local branch drop-in went to a meeting organised by the residents who were complaining. She said that people at the meeting were; ‘like baying wolves’, not allowing her or anyone else to speak about mental health problems. Several letters appeared in the local paper, one of them was headed Caring about Children and read ‘it’s because we care about children that we object to the type of people going into this complex, we’d have no objections at all to the physically disabled but we do object to the mentally ill because of the danger to our everyday lives’.

Christian read the letters and couldn’t understand why people would judge him without even knowing who he is.

After a couple of months settling in to his new flat Chris decided to start going swimming again; we were really pleased. He was going for about an hour, three times every week. One day one of the lifeguards called him out of the pool wanting to know why he went swimming so much. Chris told him the truth, that he’d had a mental illness and was trying to build up his muscles. Warning bells rang for me, whereas Paul thought the lifeguard was just being friendly. I had this gut feeling that something horrible was going to happen. The next time Chris went swimming he rang me at work. At first I didn’t even know it was him because he was shivering and crying at the same time. He kept repeating ‘what do they mean about children?’ I managed to calm him down and was horrified to hear that two uniformed policemen had called him out of the pool and asked him, ‘Why are you in there while there’s children in there?’ I can still feel those same feelings of disbelief and disgust to this day.

That day, Paul picked me up from work and the first stop was the swimming pool. I asked the manager what had prompted him to call the police. To my amazement he said it hadn’t been him but the head teacher from the local school. I went to see the head teacher who told me that she was there to protect children. When I asked her what from, she repeated, ‘I’m here to protect children’. Again I asked her from what? She replied: ‘Well he sort of stands at the side of the pool for 10 minutes.’

I explained that Chris has problems making a decision and that he would be trying to decide whether to get out or stay in. At this point I felt we’d taken enough. This situation had occurred because my son made the mistake of telling the lifeguard that he had a mental illness and because of public ignorance. Christian didn’t go swimming again until nine months had passed. If I suggested he went he’d say that he couldn’t because he felt ashamed. This incident affected him so much that he had to start taking Prozac for severe depression – which we found hardly surprising since it’s not everyday you’re practically accused of being a paedophile.

My feelings of anger and disgust remain within me and I am sure they always will.

The young police sergeant who called Chris out of the pool came to see us and openly admitted that he knew nothing at all about schizophrenia. I was amazed that this was someone who was likely to get called out to a young person going through their first psychotic breakdown and yet he knew nothing at all about what he would be dealing with.

As I explained earlier those were the bleak years and now it’s time to move onto the better times.

Recovery

About five years ago Chris was offered a psychodynamic talking therapy, based on the concept of the ‘other mind’. He has been having one-and-a-half-hour weekly sessions combined with art therapy. It began with one-to-one sessions and then progressed to group therapy. This has made an enormous difference, giving Chris a level of understanding over his condition so that he has a good insight into, and knows the difference between what’s reality and what’s delusional content from the ‘other mind’. We were also offered family therapy, and I joined a carer’s group which was facilitated by a group analyst. There we all learned about our own ‘other minds’. Using the psychodynamic therapy with the concept of the ‘other mind’ has been hugely helpful both to my family and to my son. In our ignorance we arranged for Christian to see a cognitive behaviour therapy (CBT) counsellor but after five sessions he refused to go back explaining in his own words that ‘it does my head in’. We were lucky enough to make contact with a psychiatrist who explained that patients need to be assessed to find out which therapy will work best and so Christian was finally assessed. CBT works on the basis of attempting to change our thoughts and as Christian is quite thought-disordered, we saw that CBT made matters worse in his case.

For example, in the assessment interview Dianne was talking to Christian about his day-to-day concerns. She’d been talking to him about the ‘other mind’ and he was beginning to distinguish what was his healthy self and what was coming from the other mind. He was able to concentrate and express some of his current difficulties. When I entered the room with no warning he turned to me and said in a rather loud and complaining voice, ‘You can’t expect me to say more than this. Why do you always want me to be different? It’s not fair.’

I felt uneasy and embarrassed. I tried to brush it off and said ‘It’s OK Chris. I don’t expect anything of you and I haven’t even said anything.’ The psychiatrist said ‘I think the other mind is telling you that your mother is criticising you even though she hasn’t said a word.’

For a moment Christian was about to argue then suddenly his face changed and he smiled and with some relief said, ‘You’re right. I don’t think she’s criticising me at all.’

Together with the psychiatrist we decided to take a multi pronged approach to a multifaceted condition. The first treatment in this approach was to be neuroleptic medication at the lowest possible dose – the psychiatrist explained that it had an important part to play. This was combined with attention to his diet. All too often sufferers resort to takeaways and processed foods, all of which add to poor general health.

The whole process of recovery is more one of ‘discovery’ – discovering what works well and what doesn’t and finding a way to manage the painful symptoms. This emphasises the need- adapted treatment principle – that is, treatment adapted to each individual’s needs. The third component of our recovery plan was family work with a family therapist who understands working in two minds. This understanding was a great relief to family and friends who all too often live, or spend time with, the sufferer.

Another element of the treatment plan was psycho-education, which was incorporated into the assessment interview that we had initially with the psychiatrist. In the interview we were able to understand the principles behind Christian’s treatment. This helped both at the time and somewhat later on when we had family therapy with a therapist who understood the treatment principles. This has been hugely helpful.

And finally, the psychodynamic therapy with Christian, incorporating the ideas of ‘other mind’, was the piece that completed the jigsaw for Christian. Of course other types of talking therapy might suit other people better.

So my conclusion from our experience as a family is that talking therapies are an essential part of the treatment of chronic psychosis. But they are not the only treatment as the illness affects many facets of a person’s life.

Our experience tells us that it is essential to have long-term talking therapy available for people who have been suffering with mental health problems for years. So much more should be offered by a civilised society for the management and treatment of chronic psychosis. So let’s get civilised …

Discovery or recovery?

Chris has done more in the past year than he did in the 17 years leading up to it. I believe this is all down to the factors I’ve described above and also having an excellent personal assistant, who has supported and interacted with him in so many positive ways. Direct payments provide another of the keys to mental well-being and social inclusion. It is not enough to rehabilitate people and then abandon them to ‘treatment in the community’, because it will lead to a revolving-door syndrome, isolation, depression and then of course relapse and back on the wards again. I call it ‘feeding the spirit’. Recovery isn’t just about the medical model, it’s about human beings enjoying life, feeling part of society and regaining self-worth which has been destroyed by a devastating and debilitating condition.

Helpful learning and information that I feel has helped in Christian’s recovery

Love, support and compassion from family friends and mental health professionals

The right medication, tailored to suit individual needs

Attention to diet

Talking therapy, family therapy and carer therapy

Paid part-time employment and support from work colleagues

Independent living

A befriender

Pets (in Chris’s case a dog and a talking parrot)

Exercise (walking, swimming)

Physical relaxation, for example, we bought a hot tub and this has helped Chris to relax